Ethics and end-of-life in pediatric and neonatal ICUs: a systematic review of recommendations

Špoljar, Diana; Janković, Sunčana; Vrkić, Dina; McNamara, Geraldine; Ćurković, Marko; Novak, Milivoj; Filipović-Grčić, Boris; Grosek, Stefan; Gastmans, Chris; Gordijn, Bert; Borovečki, Ana

doi:10.1186/s12904-024-01636-8

BMC Palliative Care

Table 3 List of ethical principles and related ethical positions

From: Ethics and end-of-life in pediatric and neonatal ICUs: a systematic review of recommendations

Ethical principle	Positions	Papers reference
Right to live own life	- Every human being is unique, therefore different decisions may be taken in cases of identical diagnosis and prognosis.	[23]
Right to optimal treatment and care	- Every human being is unique, therefore different decisions may be taken in cases of identical diagnosis and prognosis.	[23]
Right to optimal treatment and care	- Ethical foundations for the decision-making process are the same in children with and without developmental disabilities.	[23]
Autonomy (Right to own integrity)	- Child should receive honest information about their condition, and their opinion should be sought and taken into account.	[26, 27, 29]
	- Parents should be able to choose their level of involvement in the decision-making process.	[27, 29]
	- Parents’ wishes should be considered, and respected if in child’s best interest.	[27, 29]
	- Parents must be informed about child’s diagnosis, prognosis, treatment options and decisions in an understandable way.	[27, 29]
	- The principle is generally mentioned in the paper	[23]
Fidelity and veracity	- Child should receive honest information about their condition, and their opinion should be sought and taken into account.	[26]
Fidelity and veracity	- Parents must be informed about child’s diagnosis, prognosis, treatment options and decisions in an understandable way.	[26]
Beneficence	- Decisions to limit LST should be made within a medical team and with the involvement of parents, whose opinion cannot be decisive.	[15, 23, 24, 26, 29]
	- Parent’s wishes may be disregarded if not in the best interest of the child.	[23,24,25, 29]
	- Futile and disproportionate treatments should not be provided.	[15, 23, 25]
	- All decisions should be focused on the best interests of the child.	[25, 26]
	- LST must be provided and maintained in case of doubt about the efficacy of the treatment.	[15, 24]
	- Members of the medical team should be trained in issues pertaining to end-of-life.	[15]
	- Personal views of the members of the medical team should not influence their decisions.	[15]
	- Allocation of resources should be fair, but not the deciding factor in decision-making.	[15]
	- Physician’s primary responsibility is the child’s well-being.	[23]
	- Optimal palliative care must be provided to the patient to ensure comfort.	[15]
	- Pain and suffering of the child must be alleviated, even if it may hasten death.	[29]
	- Artificial nutrition and hydration can be regarded as LST and may be limited.	[16]
	- A decision to deliberately end the life of a newborn (DELN) is morally and legally permitted in cases of severe suffering that cannot be relieved by excellent palliative care including sedation.	[25]
	- The principle is generally mentioned in the paper	[28]
Professional duty	- Physician’s primary responsibility is the child’s well-being.	[23,24,25, 28, 29]
	- Futile and disproportionate treatments should not be provided.	[23,24,25]
	- Medical team should engage in open and honest communication and discussions.	[27, 26]
	- Pain and suffering of the child must be alleviated, even if it may hasten death.	[23, 25]
	- Periodic assessments of the balance of benefits and losses resulting from the treatment should be made.	[28]
	- In some situations, patients should be referred to other wards or Institutions.	[26]
Justice (resource allocation)	- Allocation of resources should be fair, but not the deciding factor in decision-making.	[15, 23, 29]
	- Ethical foundations for the decision-making process are the same in children with and without developmental disabilities.	[29]
	- In some situations, patients should not be admitted to the ICU.	[24]
Nonmaleficence	- Physician’s primary responsibility is the child’s well-being.	[23, 29]
	- Parents’ wishes should be considered, and respected if in child’s best interest.	[25]
	- The family must be allowed a delay from the point when the decision to limit LST was made until it is implemented.	[25]
	- Futile and disproportionate treatments should not be provided.	[29]
	- Parents must be informed about child’s diagnosis, prognosis, treatment options and decisions in an understandable way.	[29]
	- A decision to deliberately end the life of a newborn (DELN) is morally and legally permitted in cases of severe suffering that cannot be relieved by excellent palliative care including sedation.	[25]
Futility	- Futile and disproportionate treatments should not be provided.	[15, 23, 25, 28, 29]
	- Artificial nutrition and hydration can be regarded as LST and may be limited.	[25, 26]
	- Parent’s wishes may be disregarded if not in the best interest of the child.	[29]
	- The principle is generally mentioned in the paper.	[27]
Dignity	- Optimal palliative care must be provided to the patient to ensure comfort.	[16, 24, 26, 28]
	- Ethical foundations for the decision-making process are the same in children with and without developmental disabilities.	[24]
	- Parent’s wishes may be disregarded if not in the best interest of the child.	[28]
	- Futile and disproportionate treatments should not be provided.	[29]
	- Conflicts between the medical team and the parents should be resolved.	[28]
	- The principle is generally mentioned in the paper.	[27]
Proportionality	- Parent’s wishes may be disregarded if not in the best interest of the child.	[24, 29]
	- Futile and disproportionate treatments should not be provided.	[24, 29]
	- Every human being is unique, therefore different decisions may be taken in cases of identical diagnosis and prognosis.	[24]
	- Parents’ wishes should be considered, and respected if in child’s best interest.	[24]
	- Parents must be informed about child’s diagnosis, prognosis, treatment options and decisions in an understandable way.	[24]
	- Medical team should engage in open and honest communication and discussions.	[29]
	- Decisions to limit LST should be made within a medical team and with the involvement of parents, whose opinion cannot be decisive.	[24]
	- LST must be provided and maintained in case of doubt about the efficacy of the treatment.	[24]
	- Physician’s primary responsibility is the child’s well-being.	[24]
Singularity	- Every human being is unique, therefore different decisions may be taken in cases of identical diagnosis and prognosis.	[29]

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